Discover and read the best of Twitter Threads about #PwLC

Most recents (16)

#MEAwarenessHour My healthcare provider, @aboutKP,
continues to ignore #MEcfs & downplay #LongCovid.

Worse, they continue giving INACCURATE & POTENTIALLY HARMFUL info about Long Covid. ImageImageImageImage
Don't get me started on their acumen w #MEcfs. I know more than all of my Drs & specialists combined.

It's *disgusting* that it falls to the weakest & most disabled to educate my own Drs about the condition they're treating me for + trying to protect 1000s of #pwLC & #pwME.
I thought the goal was healthcare, but that's just naïvité

Money. Money is what they want, right? Well, if they want to protect their bottom line, they should consider fixing this, else risk lawsuits when the people with Long Covid realize that KP Drs' advice made them disabled.
Read 4 tweets
NIMODIPINE for #LongCovid & brain fog?

Nimodipine is a special calcium channel blocker (CCB) because it is highly lipophilic and therefore can cross the blood-brain-barrier in much higher concentrations than other CCBs more commonly prescribed in #LongCovid (amlodipine).

When calcium flows thru calcium channels, cardiac & arterial blood vessels contract. Blocking these channels helps relax & open up the blood vessels.

Most CCBs are prescribed to reduce BP or angina (chest pain caused by ⬇️ blood flow to the heart).

Nimodipine is a bit different. Bc it crosses the blood brain barrier more easily, it ⬆️ CEREBRAL blood flow.✅ Nimodipine is typically prescribed to treat neurological deficits caused by cerebral vasospasm following subarachnoid hemorrhage (a complication of hemorrhagic stroke).
Read 8 tweets
Some extracts from “The politics underpinning the neglect of people with ME/#CFS” which summarises her paper “Towards a critical psychology of #chronicfatiguesyndrome: #biopsychosocial narratives & UK welfare reform” by @JoElizaHunt…

#MEcfs #PwME

“The [#biopsychosocial] model has been used as psychosocial model, to re-frame chronic health conditions (particularly those surrounded by medical controversy or uncertainty) into psychosocial entities, allegedly amenable to psychosocial healthcare interventions (contd)”

“(Contd) and thus to ‘recovery’ and re-entry into the labour market. Such health conditions could thus be largely exempted from welfare provision, private disability insurance protection & on-going biomedical care, reducing state expenditure in these areas (contd)”
#MEcfs #CFS
Read 17 tweets
Some reflections on #longcovid 🧠 cognitive dysfunction and it’s impact on social life.
I’ve been writing these slowly over the last 3 months. I hope it’s insightful- especially to those who do not have long covid and want to understand “brain fog”. 🧵/18
Socialising is hard because of cognitive dysfunction & fatigue (the longer I use my brain, the more my brain doesn’t work). Complex tasks, like social interaction, are particularly draining because there are so many areas of my 🧠 that need to work quickly & in tandem. 2/18
A passing encounter is usually ok e.g. small talk with someone I know, but aren’t close to. Questions (and answers) are usually familiar and short. Its easy to play along, mask my struggles, smile, make excuses and be on my way. I think I appear “normal”. 3/18
Read 18 tweets
Nath's back, finding a chronically activated immune response causing neuronal injury in the brains of #pwLC. It explains why it's taken him forever to publish his big #MECFS study, but the good/bad news is he thinks the same thing's happening in #pwME. 1/4…
This looks very similar to what Komaroff et al suggested was happening in #MECFS 30 years ago: "patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system." 2/4
Nath also found the same widespread punctate hyperintensities in the microvasculature of brains which first started showing up in MRI scans of #pwME in the 80s (see J. Goldstein) and were routinely dismissed by neurologists as insignificant. 3/4…
Read 4 tweets
Press release for New Zealand paper:

“New research provides insight into Long COVID and ME: Researchers have uncovered how post-viral fatigue syndromes, including #LongCOVID, become life-changing diseases & why patients suffer frequent relapses”

#MEcfs #CFS #PwME #PwLC


“Arising commonly from a viral infection, #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS), is known to cause brain-centered symptoms of neuroinflammation, loss of homeostasis, brain
fog, lack of refreshing sleep, & poor response to even small stresses”


#LongCOVID has similar effects on people and is believed to also be
caused by neuroinflammation.

Lead author Emeritus Professor Warren Tate, of the University of Otago's Department of Biochemistry, says how these debilitating brain effects develop is poorly understood”
Read 14 tweets
Spot the difference (1)
20 days after starting anticoagulants, 10 days after my 1st apheresis treatment.
Remarkable findings: less brainfog, less dizzy, less joint pain, less muscle burning, less headaches.
#ME #MEcfs #LongCovid #microclots #HELPApheresis #anticoagulants
Spot the difference (2)
Huge improvement in available energy, cleaning my deck was impossible since winter 2020. The ‘short of breath’ symptom is less but still present, had to pause frequently. No crash, no PEM. I feel alive again.
Thank you for your help, research and sharing information:
@BeateJaegerMD @doctorasadkhan @dbkell @resiapretorius @MarekSJF @loscharlos @tjalcovrv @smithsj and all my dear #pwME friends.

Great video on H.E.L.P. Apheresis:

Read 4 tweets
New from Japan
“Clinical Characteristics of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS) Diagnosed in Patients with #LongCOVID…
“The overall prevalence rate of ME/CFS [in #LongCovid] diagnosed by three sets of #MECFS criteria…was 16.8%”
“most frequent symptoms in #ME/#CFS patients were general fatigue & post-exertional malaise (89.4% of patients), headache (34.0%), insomnia (23.4%), dysosmia (21.3%) & dysgeusia (19.1%). Dizziness, chest pain, insomnia & headache were characteristic symptoms related to #MECFS

“The male to female ratio in #ME/#CFS patients was equal in the present study [48.9% vs 51.1%] although #MECFS was generally more common in women in previous studies”

#MyalgicEncephalomyelitis #LongCovid #PwLC #ChronicFatigueSyndrome #PwME #CFSME #SEID #postviralillness
Read 4 tweets
New Zealand:
“Scientists studying potential link between [#ChronicFatigueSyndrome] & #longCovid struggle for funding”…

On Prof Tate & his research team. He seems like the sort of scientist we really want in field.

#MEcfs #PwME #MyalgicE #CFS #CFSME

“A small Dunedin-based team of researchers are critical to
understanding fatigue disease in New Zealand, but they might not be
around in another year.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #MEcfs #CFS #PwME #PwLC #MyalgicE

“Emeritus Professor Warren Tate says it took two decades for #chronicfatiguesyndrome research to be taken seriously, yet after a decade of good work it is still a mission to secure funding.

As of this week, they still didn’t have the funding to continue in 2023”

#MEcfs #CFS
Read 10 tweets
@SJschmidt963 A reply in a thread 1/16
“Often occurs with LongCovid” does NOT exclude other associations NOR does it imply LC as the only cause. If this conversation was about Ehlers Danlos Syndrome, it would be equally valid to say that “dysautonomia / POTS often occurs with #EDS”. But it wasn’t, so I didn’t. 2/16
Here is a link to a peer review paper by Hannah Davis @ahandvanish et al showing the link between #POTS and #LongCovid : 3/16
Read 16 tweets
Jacob is 11 years old & has been unwell since March 21. 2 weeks after #covid19 infection he lost mobility in his legs & required mobility aids alongside physiotherapy twice a wk ever since.

Jacob wants more support for families living with #LongCovidKids

Emily is 9yrs old, she contracted Covid in Sep21. She was admitted to hospital for 13dys in Nov due to severity of her #LongCovidKids symptoms.She now uses a walker as has severe pain in her back & legs.

Emily would like more funding for LC services

Anna is 9yrs old & has had #LongCovidKids for 2yrs.
She uses a wheelchair as has severe pain in her legs when she tries to walk. She feels people are pretending Covid is gone.

Anna is asking the PM and Scottish government to help children like her.

Read 9 tweets
Dies 👇 hier verdient besondere Beachtung: als @BerlinCures im vergangenen Jahr für sein Aptamer #BC007 zur Behandlung von #LongCovid & #MECFS händeringend Geldgeber suchte, wurde die Firma von @BMBF_Bund @BMG_Bund abgewiesen. Begründung: man vergebe keine Forschungsgelder an 1/
Privatfirmen & das Verfahren m.dem Aptamer sei zu neu & experimentell, ein positives Ergebnis zu ungewiss. Für ihr L-Aptamer AON-D21 zur Dämpfung der Immunreaktion bei #COVID19 erhielt die Fa. Aptarion Biotech jedoch 5,3 Mio € v. @BMBF_Bund. Dies lässt 2/…
erneut nur den Schluss zu, dass #MECFS & #LongCovid nicht ernst genommen & bewußt vernachlässigt werden!
Erst spät gab es ein gew. Einlenken bei LC.
@Karl_Lauterbach @starkwatzinger, werden Sie diesen beschämenden Kurs Ihrer Vorgänger fortführen? 100.000e schwerkranke #PwME 3/
Read 7 tweets
No economic sense in ending #SelfIsolation. 1 in 4 bosses say #LongCovid the main cause of sickness absence. Of UK population almost 2% are #pwLC (40% for 1-2 years). You can't fill 500,000 posts when tens of thousands a month are losing jobs to illness @longcovidwork @long_covid
At least two in three #pwLC are frontline workers (ONS, TUC, @long_covid data). @longcovidwork we hear of more and more losing jobs. There are 100,000+ vacancies in the NHS alone, doctors and nurses. Can the #NHS afford to lose more to infection and disability? @sajidjavid
Can UK schools afford to have more teachers becoming ill with #Covid each week and keep getting reinfected? Does @nadhimzahawi expect them to work while ill if #SelfIsolation ends? And how does losing more teachers to #LongCovid help the UK economy?
Read 5 tweets
14 mths Long Covid RHR 110 bpm ^ to 147 bpm *just* on standing. Still experiencing hypnagogic auditory hallucinations. There is an ongoing pathological process; it’s not rehabilitation patients need. #TreatLongCovid #pwLC #pwME #MedTwitter #MedEd #TeamGP
For anyone who thinks I’m exaggerating. Postural Orthostatic Tachycardia Syndrome (POTS) everybody:
Medics, if you haven’t heard of POTS pls educate yourselves. Many patients with Long Covid have a high resting HR (for the majority this is due to dysautomnia; a faulty autonomic nervous system, *not* anxiety). Some will also have POTs (i.e. ^ tachycardia on standing), as shown
Read 18 tweets
Great question; thanks for asking. The main reason people with medically unexplained physical symptoms (MUPS) are resistant to psychological therapy is because, they have been victims of relentless medical gaslighting./1 🧵
In absence of obvious biomarker & return of normal test results, patients with MUPS are often incorrectly ascribed a psychological diagnosis. Psychologisation of MUPS has become commonplace, and it is not acceptable. It is important to consider:/2
(A) The absence of obvious biomarker does not mean one does not exist. Simply, it has not yet been identified./3
Read 14 tweets
1/9 Thread on the narrative around #longcovid

Commonly, the narrative around long covid is that we need to ‘understand how long the condition lasts’. I find that concerning.
2/9 It implies that #longcovid is a condition that will self-resolve with time, i.e. medical intervention is not needed. But we do not know this, which makes it a dangerous assumption.
3/9 If anything, @resiapretorius’s work on microclots and platelet hyperactivation suggests otherwise. New organ damage, occurring at any point during the disease process - including many months down the line, also suggests otherwise.
Read 11 tweets

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